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Starting EP x 4 Monday 7/10/17

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  • #61
    Sorry I did not post yesterday. It was very long day. I met with Dr. Funt. He is heading this trial with Dr. Feldman. I have agreed to participate in the trial. I still have to be cleared medically first. I do not know where I have been randomized to yet. Early next week I will find out. They want me to stay at Hope Lodge in Manhattan just in case I need medical assistance quickly. I am not sure how I feel about that. Being away from my wife and kids for 4 months is going to be very hard, and on the other hand I can understand why. I was not expecting that. I told the social worker that I plan on working while going through treatment. I had told her that I drove myself to and from MSK during the 4xEP as well as worked and was still able to coach my sons' baseball games even on days when I had treatment. I am guessing that the dose I am about to receive is much higher then that of the dose I received in the 4xEP protocol.
    2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
    6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
    7/17 - Started 4 x EP
    9/17 - Completed 4 x EP
    9/17 - CT Scan both nodes have returned to normal size.
    12/17 - CT Scan both nodes still normal size.
    4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
    4/18 - Biopsy confirmed still Germ Cell Tumor
    6/18 - Started TIP Inpatient @ MSKCC
    8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
    has nearly resolved, previously 1.6 x 1.4 cm
    Previously measured precaval nodes have both resolved
    9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

    Comment


    • #62
      I can't imagine you will be able to work while on this trial. I do have a question, and forgive me for not going back and looking, but what was your initial prognosis, intermediate or poor?
      Son Grant
      dx 12/21/16 at age 17

      BEP x3
      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

      Comment


      • #63
        I will try my best to work throughout this trial. At least as much as I can. My initial prognosis was very good. I was told by all of my doctors that I have the cancer to have since it's highly curable. Seminoma Germ Cell Tumore that was confined to the testis. Stage 1A. The recurrence % was 15. The secondary recurrence % was 3. Why couldn't I win the lottery instead? LMAO.
        2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
        6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
        7/17 - Started 4 x EP
        9/17 - Completed 4 x EP
        9/17 - CT Scan both nodes have returned to normal size.
        12/17 - CT Scan both nodes still normal size.
        4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
        4/18 - Biopsy confirmed still Germ Cell Tumor
        6/18 - Started TIP Inpatient @ MSKCC
        8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
        has nearly resolved, previously 1.6 x 1.4 cm
        Previously measured precaval nodes have both resolved
        9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

        Comment


        • #64
          My husband is 100% seminoma too. I so wish we were in the 96% cured and never dealing again group. My husband found the two cycles of TIP to be much worse than BEP and the paclitaxel and ifosfamide have to be given inpatient. He lost 20 lbs in 3 weeks on TIP and did not lose any weight on BEP. He ended up getting medical marijuana during TIP which was the only thing that worked. He had previously never tried the drug in his life. Keep us posted about your randomization. I have not been able to find anyone in a similar situation to my husband but it sound likes you are pretty close. How old are your kids? My almost 4 year old has such a hard time with him being gone and the next hospitalizations will be 3 times as long.

          Comment


          • #65
            I would assume that I am going to have a harder time with TIP as well, just basing that on the drugs are probably stronger and the does would be higher since I am in the lowest 3%. I am also expecting the high dose to be tough too, but of course not going through it yet I could be way off. I actually gained 40 lbs on 4 x EP last year. I am planning on rolling with the punches as they come at me. I have twin 13 year old boys and a 5 year old boy. I was told today that I will find out next week what group I will fall in to. I have a slew of tests scheduled this week which is part of the process for being cleared to get the high dose if I fall that way.
            I wish the best for your husband and hope he comes out if this on the good side this time.
            2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
            6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
            7/17 - Started 4 x EP
            9/17 - Completed 4 x EP
            9/17 - CT Scan both nodes have returned to normal size.
            12/17 - CT Scan both nodes still normal size.
            4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
            4/18 - Biopsy confirmed still Germ Cell Tumor
            6/18 - Started TIP Inpatient @ MSKCC
            8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
            has nearly resolved, previously 1.6 x 1.4 cm
            Previously measured precaval nodes have both resolved
            9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

            Comment


            • #66
              Hi there. I'm sorry to hear that you've relapsed but you are definitely in good hands. Just wanted to chime in with chemo comment. My son had 2 rounds of each and his feeling was BEP is better tolerated because you're not confined to the hospital. He found the other was more difficult emotionally which affected how he felt physically. They are long weeks and you need to plan to keep yourself busy with whatever you can manage. TV binging, movies, reading, whatever works. Hang in there.....you GOT THIS!!! xoxoxo

              Comment


              • #67
                Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.
                2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
                6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
                7/17 - Started 4 x EP
                9/17 - Completed 4 x EP
                9/17 - CT Scan both nodes have returned to normal size.
                12/17 - CT Scan both nodes still normal size.
                4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
                4/18 - Biopsy confirmed still Germ Cell Tumor
                6/18 - Started TIP Inpatient @ MSKCC
                8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
                has nearly resolved, previously 1.6 x 1.4 cm
                Previously measured precaval nodes have both resolved
                9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

                Comment


                • #68
                  Originally posted by Jkratz View Post
                  Thank you the positive words MamAng. I am planning on working again this time as much as I can. I was able to work during the treatments and coach my sons baseball games and practices all summer and the early part of fall during the 4xEP last year, so I am hoping to be able to do at least the work part since I will be inpatient this time. I hope your son is doing well now.
                  Those of us with computer/desk jobs that can be done remote definitely have an advantage. For my 4xEP I filed FMLA just in case, but ended up being able to work almost every day from the infusion center, home, or the office if I was feeling up to it. I only took about 5 or 6 days off total through the 4 rounds. And then breaking my leg 2 years later I have been able to work from home the last 3 weeks since I am not allowed to drive. It would be tough both the monetary and psychological toll both of these would take if I had a labor job that I had to stop doing and file unemployment or such for this amount of time.
                  6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                  6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                  7/7/15: bHCG 56, AFP 42, LDH 322
                  7/13/15 - 9/18/15: 4xEP
                  10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                  10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                  4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                  4/20/16: RPLND @ IU - teratoma only!
                  9/27/2018 all clears up to this date!

                  Comment


                  • #69
                    Update: I was randomized to the standard side and am receiving TIP. I have started my 4th and final round today. I have a CT scan scheduled for the end on this cycle. I am much more tired but cannot complain. I have not had any issues with nausea or vomiting. The fatigue has been lasting longer with each cycle which is had I had expected. I am hoping that this time will be the last time I have to go though this. I am keeping my fingers crossed that the nodes have shrunk, Dr. Funt has mentioned the possibility of having RPLND with Dr. Sheinfeld. I have looked into this and it seems like its quire invasive and has me nervous.

                    Looking at my CT scan from May it seems like the nodes are very small. I wonder what they base the decision for surgery on or is it becoming a standard for curing seminoma germ cell tumor ?

                    Precaval, abutting third segment of the duodenum, more lateral node = 1.0 x 0.9 cm, previously 1.5 x 1.5 cm

                    Precaval, abutting third segment of the duodenum, more medial node = 1.2 x 1.3 cm, previously 1.0 x 0.9 cm

                    Retrocaval, posterior to the right renal hilar vessels, more lateral = 1.6 x 1.4 cm, previously 1.0 x 0.8 cm

                    Retrocaval, posterior to the right renal hilar vessels, more medial = 1.6 x 1.2 unchanged

                    I know I don't share a lot or comment either but I read the posts and am constantly thinking about everyone going through this and wish the best for all.

                    Thanks,
                    ​Joe
                    2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
                    6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
                    7/17 - Started 4 x EP
                    9/17 - Completed 4 x EP
                    9/17 - CT Scan both nodes have returned to normal size.
                    12/17 - CT Scan both nodes still normal size.
                    4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
                    4/18 - Biopsy confirmed still Germ Cell Tumor
                    6/18 - Started TIP Inpatient @ MSKCC
                    8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
                    has nearly resolved, previously 1.6 x 1.4 cm
                    Previously measured precaval nodes have both resolved
                    9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

                    Comment


                    • #70
                      I was wondering how things turned out for you. It's amazing that you are doing that well on TIP. TIP ended up being much harder on my husband than HDC and SCT. Prayers for a clean scan for you and an end to all of this. My husband's 6 week post treatment scan is tomorrow with the doctor's appointment and the results Friday. We are super nervous. RPLND and liver resection have been discussed for his case depending on residual masses, etc. and he is 100% seminoma as well. We haven't gotten any deeper into that process though.

                      Comment


                      • #71
                        Thank you Skywalker. I hope your husbands scan is clean and continues to be so.
                        2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
                        6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
                        7/17 - Started 4 x EP
                        9/17 - Completed 4 x EP
                        9/17 - CT Scan both nodes have returned to normal size.
                        12/17 - CT Scan both nodes still normal size.
                        4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
                        4/18 - Biopsy confirmed still Germ Cell Tumor
                        6/18 - Started TIP Inpatient @ MSKCC
                        8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
                        has nearly resolved, previously 1.6 x 1.4 cm
                        Previously measured precaval nodes have both resolved
                        9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

                        Comment


                        • #72
                          I’ve just read over this thread. I’m sorry for the conditions and turns your cancer took.

                          I’m at MD Anderson about to go through HDC w/ SCT I’ll have 2 rounds of two different chemo cocktails. I’ve also already had 2 TiP rounds.

                          In your case you were early relapse ?
                          Was your tumor ever considered platinum refractory?

                          I’m late relapse (7.6 years clean) and refractory germ cell tumor.

                          Comment


                          • #73
                            I am sorry to hear about your relapse.

                            Yes, my relapse was only 7 months from completing EP last summer.

                            I am not sure, we have never spoken about the tumor being platinum refractory. My scans were clean in September of 17 and January of 18. The nodes popped back up on he April 18 scan. It looks like the relapse has to fall within the first two months after cisplatin to be considered refractory. Hopefully I am not because it doesn't sound like a very good prognosis if they are.
                            2/16 - Right Orch Orchiectomy which turned out to be Germ Cell Tumor PT1
                            6/17 - Two Para-Aortic nodes showed on CT Scan. Renal Vein 1.6 x 1.4 / Renal Cava 2.5 x 2.4
                            7/17 - Started 4 x EP
                            9/17 - Completed 4 x EP
                            9/17 - CT Scan both nodes have returned to normal size.
                            12/17 - CT Scan both nodes still normal size.
                            4/18 - Ct Scan shows Precaval abutting third segment duodenum 1.6 x 1.5 x 1.7 & Retrocaval 1.2 x 0.8 x 0.7
                            4/18 - Biopsy confirmed still Germ Cell Tumor
                            6/18 - Started TIP Inpatient @ MSKCC
                            8/18 - Scan showed nodes now 1.5 x 1.2 cm, previously 1.6 x1.2 cm &
                            has nearly resolved, previously 1.6 x 1.4 cm
                            Previously measured precaval nodes have both resolved
                            9/24 - No recurrent retroperitoneal adenopathy. Residual retrocaval node measures 1.0 x 0.7 cm, unchanged.

                            Comment


                            • #74
                              Best of luck to you! I am about to start my 3rd round of 4xEP. First two were inpatient, and I can honestly say being in the hospital contributes as much to my nausea as the chemo itself. I can't even think about a hospital food tray without feeling slightly sick. I think that's a result of my first round being so rough (I had a really large retroperitoneal tumor that was causing tons of nausea before I even started chemo, so I started round 1 with a pretty bad nausea deficit).

                              I had to read through this thread to see how you handled 4xEP, sounds like it wasn't too bad. Since round 2 was so much better than round 1, I'm hoping I don't see too much of a decline (nausea, chemo brain, etc.) with round 3.
                              March/April 2018 - Started feeling tightness in right abdomen
                              6/4/18 - US+CT confirm massive tumor in right retroperitoneum (25cm x 17cm x 17cm)
                              6/20/18 - Biopsy performed (suspecting sarcoma)
                              6/25/18 - Diagnosed stage IIIC seminoma
                              6/28/18 - Started 4xEP
                              9/7/18- Finished 4xEP
                              10/10/18 - PET Scan (awaiting results)

                              Comment


                              • #75
                                Jkratz, hopefully you’ll have a good outcome now. Sorry if I added any stress. Right now I’m stressed / anxiety laden I know how easy small things can just make the mind run wild.

                                But from what I’ve read early relapse still has good/great prognosis.

                                Comment

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